Float Like a Buttahfly
— Kerry Wong

A graphic depicting a butterfly winding through the sky.

Kerry Wong lives in Westchester, NY, with her husband, the boy next door she had a crush on since she was a child. She was diagnosed with sarcoidosis in 2015, after an 8-year search for answers. Though disabled, Kerry remains active as a writer and advocate for the rare disease and chronic illness communities. Her goal is to help others living with these conditions feel seen, validated, and empowered. She recently published Kaleidoscope: Rare Disease Stories, a diverse collection of true stories told by nearly 50 rare disease warriors, and plans to expand this into a series. Through her column, Kerry shares how chronic illness has led to transformation, and invites readers to float with her, “like a Buttahfly.”

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In an inaccessible world, sometimes you can’t make lemonade

When life gives you lemons, you make lemonade, or so they say. That metaphor doesn’t work quite as well for me, though, because I don’t like lemonade. Still, I agree with the sentiment and try to make the best of things whenever I can. But sometimes you just can’t stomach…

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Sharing the painful truth can comfort chronic illness patients

Like most girls growing up in the 1980s, I had a massive crush on Michael J. Fox. I watched all of his shows and movies (many times) and hung his picture on my bedroom wall. When he started writing books, I had to read those, too. These days, I admire…

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When living with sarcoidosis, it helps to be ‘Simply More’

My mom visited me at the hospital during my latest infusion and, unsurprisingly, did not come empty-handed. She brought lunch and a few tchotchkes she’d picked up recently. Among them was a decal that read, “And one day, the girl with the books became the woman writing them.” It made…

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After unrelenting health setbacks, frankly, I’m sick of being sick

I am sick of being sick. Tired of being tired. Sick and tired of being sick and tired. That’s a fairly common sentiment among people living with chronic illness, since “chronic” means it never seems to go away. I’ve been living with sarcoidosis, rheumatoid arthritis, fibromyalgia, and more for…

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When pain prevents progress, pursue purpose with passion

For the past few days, or weeks — or is it months? — it feels like I’ve been hurting more and more. It’s easy to lose track of time when one day lost to pain blends into the next. It’s difficult for me to explain, so I can only imagine…

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When chronic illness life feels overwhelming, seek joy and support

When I was diagnosed with sarcoidosis, I immersed myself in the community and made April — which is Sarcoidosis Awareness Month — my busiest time of the year. I dressed, accessorized, and dyed my hair purple, the official color of sarcoidosis awareness. I created walkathons and other awareness events,…

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How do you celebrate Autoimmune Awareness Month?

How do you celebrate an awareness day, week, or month? I know how we celebrate other special days on the calendar. New Year’s Eve? Watch the ball drop and kiss at midnight. Passover? Dinner with the family, and no bread for a week. Birthdays? Celebrate with loved ones, perhaps dinner…

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The best advice I ever got for dealing with a rare disease

Over the weekend, I went to see the Harlem Globetrotters on their 100 Year Tour. I’d seen them as a child, but since I only started watching basketball a couple of years ago, I’ve gained a new appreciation for their incredible skill. The shots they take, the stunts, the acrobatics…

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Patients and healthcare providers should approach AI with caution

Last week, I met with a new hepatologist to address concerns about my liver function tests. The week before, I had a follow-up with the neurologist who’s been treating my sarcoidosis-associated small fiber neuropathy for years. At both appointments, my doctors asked permission to use artificial intelligence (AI) to…


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